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Lupus Awareness Month


That’s right, May is Lupus Awareness month and let’s just say I have been miserable all month.  UGH!!!   I hurt so badly that I can’t even breath!!!!  For some reason, my right leg (ankle, knee, hip joint) are throbbing with pain.  My head is splitting in two and no amount of medication is helping me.  I feel like I’m next to death and I am exhausted.

There is so much we don’t know about this disease and so much that goes wrong.  One of my favorite places to visit on the net to get information and “talk” to fellow sufferers is   It is a great source of information and understanding for those of us who suffer from this INVISIBLE DISABILITY!!!

This site is also the home of the “Spoon Theory” which helps some people to better understand what it feels like.  I have a friend who read it but still doesn’t get it.  I just think he’s too thick headed to understand or just doesn’t want to understand.  I slept for 8 hours last night, woke up for 2 hours, then went back to sleep for five more.  I’m trying to stay awake right now; but with my body working on overload, I’m sure I’ll be asleep sooner rather than later.

What is my body doing to me?  It’s on overload.  My body is on high alert, fighting off an enemy that doesn’t exist.  What is it fighting?  My body organs.  With no more infection inside, my cells have decided to fight off itself.  I’m exhausted all the time; because my body never truly rests.  All the time, my  body is fighting.  White cell count HIGH!   This has left my quality of life in the toilet.

There is something to smile about, though.  Lupus used to be an automatic death sentence, however; it isn’t necessarily one today.  With research and new medications, there may be a cure soon.  At this point, they can only give you things to help with the pain, maybe help with the inflammation and to ease your suffering a bit.  My bad luck is that I am allergic to narcotic pain relievers, so I only can take aspirin or  Aleve.  I can’t even take Motrin due to my allergy it.

I go outside and the photo sensitivity just kills me.  I LOVE living in Florida; but I hate what the sun does to me when I’m in a flare.  My head is hurting so badly that I’ve got my monitor brightness turned down and am sitting in the dark.  I’m mostly typing this with my eyes shut, since I learned to type as a teen.  I’m hurting so badly.  I want to cry; but I don’t have the energy and I know that it will just make the pain worse.  It is so bad I want to vomit from it.  I can’t take much more of this and yet, God keeps me here, so I know he has a plan for my life.  I sometimes wish he’d let me in on it.

This reminds me of a guest pastor who spoke at our church one day.  He told the congregation that if we’re still in pain, still in need of healing and God hasn’t helped us, that we’re not doing it right.  That we’re not sincere in our quest for healing.  I was really upset by this because he made me feel like I was not worthy and that is totally not what a pastor should do or say to those who look to him for guidance.  I was really happy our Pastor came back the next week.

Anyway, I’m gonna jet because I’ve reached the end of my endurance and hit the hay.   Thanks for taking the time to read this and try to understand a little more about invisible illnesses.


About irishgoddess1337

Retired Marine, Christian who survived Domestic Violence, living with Lupus, PTSD, Fibromyalgia, Migraine, TMJ, Trigeminal Neuralgia, Sleep Apnea and living my life for Jesus! My son is a Senior this year!! YIKES! I love music! My son plays drums in his High School Marching Band & Percussion group. We live with three fur babies -- Tippy the Corgi and Honi & Teddy the Poms. I scrapbook, stamp and make rag dolls for fun! I've recently started acrylic painting and making jewelry. Life is good!

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